Manufacturer ends life-saving treatment funding gridlock – September 26, 2014

Alexion offers government immediate supply of Soliris for aHUS patients in urgent need

A small group of Australians battling an ultra-rare, devastating blood disease may now pursue fuller, happier and more fulfilling lives following Alexion’s announcement today to make Soliris immediatel available to the Government for those in urgent need of access to treatment.

In a statement issued by Alexion this afternoon, the company announced it was pleased Australian patients living with aHUS may now gain immediate access to Soliris – the only treatment proven to prevent premature death and vital organ damage in those living with aHUS. Conversely, the company expressed its disappointment with the government’s failure to agree to provide Australian patients with ongoing access to Soliris, consistent with the treatment regimen of other aHUS patients world-wide.

“The Government’s ongoing refusal to allow Australian physicians to determine the best care for their patients with this devastating and life-threatening disease will continue to threaten patients’ wellbeing,” said David Kwasha, Managing Director, Alexion Australasia.

To the contrary, an upbeat Kerri Grey, President of the aHUS Patient Support Group Australia (aPSGA) and mother of Ashley, 6, Australia’s first patient to be granted compassionate access to Soliris through Alexion’s compassionate access program, welcomed the news.

“This is incredible news for Australians living with aHUS. The aPSGA is absolutely thrilled that both the government and manufacturer have finally agreed to end their funding gridlock by providing Soliris to those in urgent need of access to the life-saving treatment.

“We are extremely grateful to both parties for genuinely listening to, and considering the welfare of our small patient community,” Mrs Grey said.

“While the government’s treatment funding conditions are not ideal, we will continue to fight to influence this criteria as more clinical data becomes available.

“In the interim, Australians in desperate need of Soliris will finally be granted access to this life-saving treatment, and no further lives will be unnecessarily lost,” Mrs Grey said.

The announcement comes after a rigorous political lobbying campaign by the united aHUS community to secure government funding for Soliris, almost two years following the Therapeutic Goods Administration’s (TGA) approval of Soliris for the treatment of aHUS.

“It’s been such a turbulent, exhausting and heart-wrenching battle for our community, many of whose lives have either been lost or compromised in so many ways,” said Mrs Grey.

“This afternoon’s announcement by Alexion to end the funding gridlock with government is music to our ears.                                                                                                                                                     

“We have patients in desperate need of Soliris right now and trust the government will provide them with urgent access to safeguard their lives,” Mrs Grey said.

aHUS is a disease that waits for no one. The ultra-rare, life-threatening blood disease severely damages the body’s vital organs, including the kidneys, heart and brain. Around 10 per cent of patients will die within the first year of diagnosis, if untreated, increasing to 32 per cent within four years. Furthermore, within one year of diagnosis, around 64 per cent of patients with aHUS will die, require dialysis or develop permanent kidney damage. Less than 30 Australians are known to the aPSGA to be living with aHUS. Since March, 2013, at least four lives have been lost to the devastating disease.

Soliris is the only scientifically proven, available medication for aHUS. Approved by the Therapeutic Goods Administration (TGA) for the treatment of aHUS in October, 2012, but carrying a hefty price tag of more than $600,000 per adult, per year unsubsidised, Soliris has been permanently out of reach of all Australians battling aHUS. The treatment has been entangled in a quagmire of government bureaucracy for almost two years. Without Soliris, aHUS patients will spend most of their lives attached to machines, having dialysis or plasmapheresis (an inferior ‘maintenance’ therapy used in the absence of a clinically proven treatment for aHUS) before passing away.

To learn more about aHUS and the aPSGA, head to www.ahusaustralia.org.au

For more information or to coordinate an interview with Mrs Kerri Grey, contact Kirsten Bruce or Mark Henderson from VIVA! Communications on

0401 717 566 / 0431 465 004.  

One thought on “Manufacturer ends life-saving treatment funding gridlock – September 26, 2014

  1. Margriet

    That is such great news!!!! As a Canadian organisation that is also lobbying our government for public funding this is very encouraging news. We will continue to engage with government to have access to Soliris for all aHUS patients that are in need.

    Reply

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